Dr points out constipation

Andy was pretty irritable when I picked him up from school yesterday. He cried all the way home, and wouldn't eat lunch or dinner. I thought his ear infection was back. I took him to the doctor the next day, and she said his ears looked great. Then she felt his belly, and found he was badly constipated. She could feel a large hard stool in his belly. She showed me how to feel for it too, it was like a big rock in his stomach. He had been having small poops, but I didn't think anything of it, because he had a small appetite while he was sick.

We headed up to the drugstore for a pediatric glycerin suppository as advised by the doctor. You don't need a prescription for this. The doctor told me that if only small stools continued to come out, we would have to resort to a stool softener. One small stool when he woke from his nap, plenty of water, and he ate dinner. Then in the morning no stool, and more irritability. I read on line to try a teaspoon of corn syrup, and olive oil on veggies, which I cooked in the toaster oven. Then he ate lunch. I gave him another pediatric suppository, as it had been 24 hours since the last one. They can only have one a day. It took about ten minutes, he relaxed in his bed, then had a large stool. Finally! Poor thing has been miserable, and couldn't tell us why.

Pesky Ear Infections

Andy and I have been sick since Thanksgiving. Germs keep coming and going. Andy spent all night Saturday and Sunday crying and uncomfortable, so we went into the doctor Monday morning.  Poor Andy had an ear infection and an eye infection that was being treated by antibiotics. He stayed home from school for a whole week.

We actually had a lot of quality time together. He just wanted to snuggle and cuddle with me, and kept looking right into my eyes and smiling. He was so comforted by me, it was really nice. I felt like he was saying "thank you, I love you" with his eyes. He seemed to be getting better. Then on Sunday night, he woke up screaming and was out of control with crying for over an hour. I headed up to urgent care with him.

His ear infection was coming back and was now in both ears. They felt his current antibiotic wasn't working, so I went back to his general doctor first thing in the morning to follow up. Andy received the first of a three day series of antibiotic shots.

We felt so bad that Andy couldn't communicate to us what was wrong, when he was in so much pain. I'm glad I decided to just take him into the doctor once I realized I couldn't console him, and it was unlike other times in the past.

Now that Andy had a shot of antibiotic, he is feeling so much better. He had such a great day at school. I think he is relieved to be back at school, and that he is finally out of pain.

Andy's school update and family update

Andy's current state has been pretty good. He loves going to school. He shows affection towards his classmates, teacher and all school staff. He seems to enjoy being there. He is happy there. I spent the first several weeks with him, and then slowly stepped away.

I feel Andy's quality of life is better with school in it. There is only so much I can do to keep him happy and occupied. Meeting new people and having new experiences has been good for Andy.

Andy continues to take Risperdal, and needs it daily. He is a mess without it. It helps him to be cheerful, and not irritable all the time.

We are a family with a special needs child, and this is not easy. I still have very negative patches, but I keep trying to find ways to go on with my life. My daughter needs me too. She often falls by the wayside, when I get swept up with all of Andy's needs.

Having Andy and discovering all his limitations swallowed me whole. I can still become engulfed in it, but I have to still be a functioning wife and mother to my 5 year old daughter. I still have to try to enjoy my own life, and it's tough. I feel guilty when I focus on myself or my daughter. I'm trying to find a balance, so I won't be miserable. I am what holds this family together, and I have to be positive, upbeat and refreshed.

Andy is happy, and I should be happy for him. He does not know of his limitations or things he is missing out on. My goal now is to just try to make sure that my whole family's quality of life is good. I am ready to do what I need to in order to make sure my family has what they need.

We can still have great quality experiences, even if it is a challenge to do so.

Take care,

Amy

Waving Hi?

Andy is three and a half now. I've seen skills emerge and backslide too many times. Words come out of his mouth a couple of times, then I never hear them again. Or the army crawl emerges, then goes away for a long time. Right now, it seems he is trying to wave "hi". I really am not getting too excited about it, because I feel it will just go away in a few days, like all his other skills do.

I am hearing him say random words, then never again do I hear the word. I feel so upset, because it seems like his words are in there, we just can't get them to come out. We've both been really sick, which has allowed a lot of bonding time for us. He's been really cuddly with me, and giving me a lot of eye contact and smiles.

I am getting a lot of therapeutic toys for Andy for Christmas. I'm hoping that just pushing along, and not looking back will get us somewhere.

Lovely Day

Andy has been having a great time at school. He really likes everyone there, and has been really happy to be there. I am able to drop him off at school and go run errands on my own, it has been nice. I've been praying for him to have a better time lately, and I've been feeling better as well. He's not always happy, but he's been having good days here and there, which is a nice change.

I recently tried to wean Andy off of his Risperdal, but it went very badly on the days that he got no meds at all. So, I quickly started him back on the Risperdal at .25ml a day. When I went back up to anything over .30ml he was way too sleepy at school. We are sticking at .25ml a day, and I don't think I'll try to take him off again until the summer. I'm too nervous for him to have terrible days at school, I think summer break would be a safer time to try it. I was curious to see how he would do without getting the meds, and it didn't seem to be good. I wasn't patient to give it more than a couple days, so for now he will stay on the meds.

Kids are kids

Parenting stinks, no matter what. Disabilities or not. I have one of each, my daughter is totally normal. She really frustrates me. She's five years old though, she isn't going to think and act like an adult. There are times when I can't decide who is harder to parent. They are both SO tough.

Lately, I'm realizing that Andy's disability isn't always to blame when times are tough. He's just a kid, and he is going to have bad days and act up, just like other kids. So back to, parenting just stinks. I need more time each week, when I don't have to parent my kids. I'm finally starting to get it.

I've been able to leave my son at school, now that he knows everyone, and everyone has gotten to know him. I first started by leaving him there for the first hour alone, and noticing that he was quite happy when I returned. He was in a good mood, and hadn't been crying. We hit a turning point last week, when I would start to feed him his snack at school, he would start crying and lose it. It seemed like he was trying to tell me, "just take me home, I'm tired".

So, I asked the teacher if they could feed him snack, and see if he freaks out. They've done it twice now, and he's fine. As soon as I come back into the classroom, no matter what time, when he hears my voice he gets whiney and soon cries. If I return a little early, I stay quiet and don't let him see me until it is almost time to take him home. This is working so far.

It gives me time to run errands without kids, or go visit with people. Time that I don't have to be a parent. I do still feel like I should be there checking on Andy, but it just makes things worse. Now that I trust they are doing what I would do with him, and they know about some of his triggers, I feel better about having him there without me.

Feeling better

The sadness patch seems to be over now. I put my mind on the back burner and got all my laundry done, and cleaned up the house. I was able to get everything done while Andy stayed busy playing with my daughter, or watching TV. Now that the house is in order, I feel it will be easier to face the week, and getting the kids ready for school should be easier.

I am happy with my life right now, and accept my current motherhood duties, although I still get sad about the scenario. It doesn't mean I hate it, but I think it is okay to occasionally be down, and just let myself feel the feelings that come to me. I know there are people that have it much worse than me, so I don't want to seem unthankful for everything that I have.

Andy's developmental delays redefine every single situation for all of us. We have the power to choose to be in situations or not to participate in things that we don't feel comfortable with. We have to make things more simple, and I find myself savoring small moments in our lives.

The Good, The Bad and The Ugly

I've been seeing way too much of the ugly lately from Andy, and my daughter! Oh, I am trying so hard to stay sane! My son cried for an hour at school today, then cried all the way home for 40 minutes. It is so mind numbing. I can't even focus on anything else. I'm just trying to keep my sanity here. I kept thinking, "now I understand that song 'I wanna be sedated'". I'd love to be sedated for a few days, just put me out of my misery, my God, I'm hanging on by a string. I couldn't do anything, after putting my son down for his nap, but sit on the couch and fall asleep. Despite all the laundry and cleaning that needs to get done. I need a break, Lord help me! Just WAY too much ugly lately. Enough already, I've had my fair share. Now I can go to bed.

What I'm grateful for

Although I feel that my time spent in the motherhood realm has been unfairly tough, there are some things I am grateful for. I am extremely grateful that Andy takes nice long naps. They really help to get him out of a bad mood, and give me the break I need between morning and afternoon. I am also grateful that he is a really good sleeper at night. He has slept through the night since he was 9 months old (when I stopped nursing). Ever since, he always sleeps 12 hours a night, unless he has a fever and needs medicine. He is also an excellent eater. He will eat anything, and loves food. He has no problem swallowing or chewing, and I am SO grateful.

I am also grateful that he is able to give us smiles and giggles, and can show us affection. It helps us to know that he loves us, and is happy to be with us.

Sample letter for a one-on-one assistant for special needs class

I recently wrote a letter to the special needs director at my son's school. He is in a special needs preschool class. I wouldn't consider it an SXI (severely multiply impaired) room, because all of the children in the classroom are able to walk. Some of the kids can talk. Some of the kids can let you know what they want through gesturing. This center does not have a lot of the equipment my son needs, but I feel they are doing well with my son Andy so far.

The letter I wrote was to request that a one-on-one assistant be hired just for my son during his class time. Feel free to copy this letter and use it for your own child. The special needs director says that she will consider my request, and would like to meet with me this week.

Sample letter to petition your school for a one-on-one assistant for your child:

October 8, 2012

From sender of letter

Mother of Andrew

Address

City, state, zip

Ms. Special needs director

Director of Special Education

address

City, state, zip

Dear Ms. special needs director,

After observing and actively participating with my son Andrew's classroom/XXX teacher's class for six weeks at the XXX School, I feel he needs a one-on-one assistant to help him while at school. The assistant would remain with Andy and aid in his personal safety around the other children, and help him to stand while engaged in activities. Andrew is quite unable to do a whole lot for himself, and lacks protective skills.

Andrew requires assistance getting in and out of his wheelchair, getting in and out of seating for activities, and needs to be fed at snack time. Andrew also needs to be given the opportunity to stand in the classroom for short periods of time. These activities would include standing at activity tables where children explore and scoop through things like rice or corn. Andrew can stand with the assistance of an aid, and needs to be watched so that he doesn’t fall over. Having Andrew stand for small periods of time helps improve his brain functioning and promotes bone density and bone growth.

Furthermore, he needs to be actively watched while playing with other children on the floor to keep the children from stepping on his hands, legs, or climbing on him. He also needs to be monitored, so that he won’t bang his head on the floor, due to falling from seating, or falling backwards from a seated position on the floor, as he lacks protective measures for falling. One of Andrew’s doctors, XXXXX,D.O., suggested my pursuit of a full-time assistant for him at school.

I would like to further add that Andrew’s teacher, XXXXX, and the assistants in the classroom are doing a wonderful job. I do not feel that Andrew would be neglected, but I do feel he needs a lot more assistance than the other children in the classroom do. I am most worried of him being harmed, if a staff member can’t get to him fast enough, when another child may be hurting him accidentally. I have been unable to leave him at school alone, for fear that he will get hurt. I also stay at the school with him, because I would like him to have opportunities to be in standing positions, which would require someone at his full attention that could not assist with other children.

Please consider hiring an assistant to work with Andrew one-on-one while he attends school. Please also let me know if you can think of another solution to this issue. Feel free to contact me at XXX-XXX-XXXX, or by email at XXXXXXX.

Thanks for your consideration,

Amy H